Sunday, May 29, 2011

We seem to be moving in the right direction. In general things are improving each day. Here are just a few examples:

-she seems to be processing faster- before she took so long to process things that most of the time we would just give up and do something for her or to her in order to get it done (ie telling her to put her socks on or handing her something - most of the time we would just have to put the socks on or grab her hand and put something in it because we couldn't wait the 2-3 minutes it took for her to process what we were saying) *I promise I pray for patience everyday* now she will do some of these requests or commands almost immediately (maybe 10-30 seconds)

-affectionate- she is hugging and kissing on us constantly whether we ask her to or not and we ask A LOT! IT IS WONDERFUL!

-following simple commands- we are noticing that she follows commands after only telling her one time (ie getting dressed I used to would have to hold her shorts in front of her and say two or three times to step in and then I'd have to tap her legs, now she typically steps in before or on the first time I say it) going back to the processing

-more aware- now she just generally seems to be a little more aware of herself in the world especially as it relates to others (ie she doesn't run into as many people or things as before and she is anticipating some actions and events that are familiar or routine)

-potty- this one has to be my favorite after the hugs and kisses - although we have been trying to potty train for at least a year now she has never really 'gotten it' she will go if we take her and remove her pull up and tell her to sit and go; however, due to her limited language capabilities she has never been able to tell us when she needs to go (we have tried signing, different words, pictures, taking her every 20 minutes, etc...) three times this past week she has let different people know (in various ways) that she had to go potty (two of the three trys were successful) WAY TO GO CAMILLA!!! Since she is approaching six years old and is a little above average height and weight for her age we are running out of all 'easy' options for diapers, pull ups, overnights, etc... she wets the bed at least 5 out of 7 nights of the week and this Mama is tired of washing sheets everyday - so please pray that this area is mastered quickly

-interaction- while we were still in the hospital we noticed improvements in eye contact and attention span and they seem to be improving each day - she is paying attention to what is on the television and will respond by dancing or laughing in some cases but one of the biggest changes has been her interaction with Crosby - she constantly kisses him on the head and initiates play with him - when he tries to play with her she will laugh hysterically and doesn't try to avoid it at all - one other point worth noting is that they were playing on the floor the other day and were getting a little rough with one another, Crosby got off-balance while sitting and was tipping over and Camilla reached out as if to catch him (she would have been unsuccessful and still didn't seem to really want to 'grab' him but her 'instinct' and 'reaction time' was there and it was so good to see and don't worry I caught him:)

-therapy- physical therapy started last week and will be once a week throughout the summer in order to strengthen her left leg back to before surgery standards, we will be going to Genesis Rehab here in Demopolis - we will also travel to Tuscaloosa to the University twice a week for speech therapy for the next eight weeks - that session started today - please pray for safe travel, low gas prices (lol) and my sanity as this willbe too much driving even for me!

As you can tell we are seeing results but we do have a long way to go - "A journey of a thousand miles begins with a single step," (Lao-tzu) and surgery was the first step in the RIGHT direction.

Sorry for the delay in posting. I should have updated last week but procrastinated:( and then had a busy (sleep deprived) weekend and now this week is full of traveling and therapy. Monday we returned to see Dr. Blount (neurosurgeon) for a check on her incision. He was concerned with a spot on the incision where about a one inch portion had scabbed over on top of and to one side of the cut. They removed the scab in the office to find that it wasn't as bad as they expected; however, they want to see us weekly until there is no question that it is healing properly. The risk with this is 1)an ugly scar on top of her head 2)if infection were to set in it could easily and quickly spread into the incision, bone flap and beyond and could possibly require another surgery. I now have to clean that spot twice a day, whereas before we only were washing her hair daily to keep it all clean. Please pray that this spot heals quickly and cleanly in all ways. Poor Camilla has to be wondering why she's not able to swim this summer (it was all she did last summer) and he would not even guestimate a time-frame until next week to see this spots progress. On top of not being able to swim we are not really even able to get outside much due to the heat-wave (and Alabama summers in general) because the cut needs to stay clean and dry and trust me if you're outside for more than about 5 minutes these days - nothing is clean or dry! Poor thing just plays at our front door all day saying 'out'.

I cannot adequately express my thanks for the cards, calls, messages and meals that we continue to recieve daily! Each one seems to arrive at just the right moment for encouragement or relief! Same goes for the prayers - we continue to feel them in a very real way.

Before I end I'll answer the 'million dollar question' - NO SEIZURES TO DATE. Three weeks of no seizures - after 15 to 20 per day for 5 1/2 years - WOW - even if they start tomorrow I'll continue to praise GOD for these three glorious weeks - have I mentioned how awesome it is to be present at a miracle?

"For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you. Plans to give you HOPE and a FUTURE." Jeremiah 29:11

Thursday, May 26, 2011

I just realized today that we should just now be coming home from the hospital-that's what we were told to expect in the begining and we've been home four days. Praise God! Praise Him for a strong little girl who is bouncing back from MAJOR surgery so quickly and is an amazing inspiration to so many.

Camilla is up and walking on her own. It took about three days after coming home for her to be able to get that leg under her. The first two days she was SO FRUSTRATED when she couldn't walk on her own and it broke my heart because she looked so defeated sitting on the floor and dragging herself from room to room. However, I refused to carry her or help her walk while we were at home because I knew she would be so determined to walk that it would drive her to get stronger. She is such a fighter! The first day that she was walking on her own she was incredibly wobbly and fell once but thankfully did not hit her head on anything. She is still unsteady and a bit unsure, especially when it comes to stairs or getting in a car, but she is getting better everyday. We will start physical therepy next week because she is locking her left knee as she walks and it is creating a little limp. We will also start speech therepy next week in Tuscaloosa at the UA Speech and Hearing Center and do this twice a week throughout the summer (this place is 3 blocks from the tornado path-I'm very thankful that this wonderful facility wasn't damaged).

We will see Dr. Blount for a 'wound check' next week and will see Dr. Kim on July 11th for our first EEG. Please pray for this day - although we have not seen any seizures since the surgery this test will show if she is still having abnormal activity in the brain. Let's pray that we continue to see NO SEIZURES and that her EEG is NORMAL! Wow - that's such an odd word - normal - and extremely relative. And just FYI - she has to be seizure free for a year before they will consider weaning any medications. Let's pray that we get to this point.

One other specific prayer request is for her behavior - no problems yet - but I know that with this type of surgery behavior problems can become a big issue. Since we have already dealt with SEVERE hyperactivity and some aggression/metldowns in the past I am very aware that I do NOT want to deal with this again. Please pray that these will no longer be issues for Camilla. On a different note, she already seems to be making better eye contact, focusing longer on tasks and just more calm in general. She also seems to be sleeping so soundly - she doesn't move around all night and her breathing is deep and steady - she just seems to be resting well. Also, we believe that we are starting to see some very small cognitive gains. I hope that what Dr. Blount said is true and that without all of the 'white noise' in her head she will be able to sleep, focus, learn, play, listen and do everything with more purpose and intent.

We are looking forward to a busy summer full of fun and learning. We know that we will have to make some decisions regarding meds, school, therepy, etc... but we also realize that we are in a great place right now. We are full of hope for Camilla's future and ours! So we will continue to be positive and hopeful and look forward to each new day with our sweet 'baby angel.'

"For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you. Plans to give you HOPE and a FUTURE." Jeremiah 29:11

Sunday, May 22, 2011

We are home and happy :)Camilla began drinking (without coughing) after about 3:00 pm on Saturday and continued to drink well through the night. We arrived home about 3:00 this afternoon and she was thrilled to be home, exhausted but thrilled.

She is doing so well. Her coloring is fantastic, the incision is big but healthy, her swelling has passed and her smile is slowly returning. We are still dealing with some weakness on the left leg. She is not walking independantly yet but should have no problem regaining full use in the next day or so. The big concern with this is that her mind doesn't yet realize that her leg is not 'up to speed'. She is wanting to 'go' and her leg would make her 'fall' and we have to be very careful with that head! Still alternating tylenol and motrin for pain relief and trying to push food and water every chance we get. She tried to play outside some today but quickly grew tired. Hopefully she will regain her stamina about the time the strength comes back to that leg.

After much deliberation we have decided to post SOME pics of her post-surgery. We will still not publish any that show her swelling, black eyes, etc... but decided to post ones that show what you would see if you see us out and about in the days and weeks to come and yes, that includes the incision...

Sooooooo tired so this will be all for tonight. Thank you all again for the outpouring of love, support and prayers. The dinner tonight was fantastic and the food website is a new thing to me and I'm so grateful - thanks Pam for setting it up and to all who have signed up - you make me smile:)

"For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you. Plans to give you hope and a future." Jeremiah 29:11

Friday, May 20, 2011

A 'special' Mom just shared this one with me and I thought it was so appropriate in so many ways - the last paragraph describes what we have seen and experienced in the last few weeks and days...

The Brave Little Soul

Not too long ago in Heaven there was a little soul who took wonder in observing the world. She especially enjoyed the love she saw there and often expressed this joy with God. One day however the little soul was sad, for on this day she saw suffering in the world. She approached God and sadly asked, "Why do bad things happen?; Why is there suffering in the world?"

God paused for a moment and replied, "Little Soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean?" she asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone."

The little soul began to understand and listened attentively as God continued, " The suffering soul unlocks the love in people's hearts much like the sun and rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world to suffer - to unlock this love - to create this miracle - for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain herself. With her wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you. God and the brave little soul shared a smile and then embraced.

In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed." Thus at that moment the brave little soul was born into the world, and through her suffering and God's strength, she unlocked the goodness and love in people's hearts.

For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys-some regained lost faith-many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased. --John Alessi

Good days and bad - that's what recovery is all about. Here we are on the third day out from surgery (which they say is the worst with any kind of surgery)and if this is the worst I'll take it.

Yesterday was a rough day for Camilla. The nursing staff didn't wake us for her 5:00 dose of tylenol and when she awoke at 7:45 she was in pain. It took the better part of the day to get the pain somewhat back under control and try to get her comfortable. She never cried (I don't think she had the strength to) but her eyes plead 'make it better Mama'. She also slept for the better part of the day and barely managed to stay awake during the visit from Occupational Therapy. After seeing Dr. Blount he decided to give her Tylenol with codeine to better manage her pain and to put her back on IV fluids to prevent any dehydration since she wouldn't drink anything (and because she lost what little bit of food she had eaten right in front of him). After the first does of T3 at 11:00pm she went soundly to sleep and other than me having to give her meds every three hours she slept great until 9:30 this morning. Today she has been very alert, awake and happy. She is laughing and smiling and playing with toys. She did great for both the physical and occupational therapists. She is still having trouble with some weakness on the left side (due to moving the right hemisphere during the surgery) and she will not really put any weight on her left leg yet. We were warned that she may have temporary weakness on that side and that it should return to normal within two weeks.

Brandon went to work today so Milla and I had some good 'quality time' together. I crawled up in her bed and we snuggled and since she can't really play with her hair and suck her thumb - she played with mine. She has talked alot today and is regaining many of her words. We also went for a wagon ride around the hospital. We bumped in to Dr. Blount in the Go Store and he was glad to see her out and about. We also went to Children's Harbor and she played some games and played with lots of toys (from the wagon of course). After all that fun - she was EXHAUSTED! After resting for a little while we were then able to get her a good bath and even a good head-washing. The bandages came off yesterday and we attempted to wash her hair then but weren't able to do it well because of her pain. Today she had a good long bath and we were able to wash, dry and comb her hair. She now has little pig-tails all over her head. We have also been able to get a good look at the incision - the big, bad, much larger than we ever expected incision - all 6 inches of it. The swelling in her face is better and her eyes aren't black today either.

As for her eating and drinking - it is a slow battle. She is eating more today than yesterday but is still adamantly opposed to drinking. We know that her throat is most likely sore from the breathing tube but now they are concerned that she may be aspirating on thin liquids since she coughs each time she is forced to drink or swallow liquid medications. We may have to do a swallow study to rule this out but we do have the clear to go home as soon as the 'drinking' situation is resolved.

Still grateful for all of the gifts, visits, calls, messages and most of all prayers. God continues to surround us with peace and strength that surpasses ALL understanding. There are moments when I hear myself say 'brain surgery' and I think "I should be hysterical" but I just can't manage it. Now I don't want to mislead anyone - this isn't easy, there are plenty of tears, fears and questions but I am always comforted knowing that this is God's plan and He is carrying me through every moment of every day. I continue to look forward to seeing what he has in store for Camilla.

As for seizures - we'll see. We have not seen a seizure as we knew it before. We have seen a few unusual shakes and jerks but not sure if that could be a side-effect of the surgery. Unfortunately we are very aware that epilepsy is a disease that can restructure itself and 'fight back' so again we remain cautiously optomistic.

"For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you. Plans to give you HOPE and a FUTURE." Jeremiah 29:11

Wednesday, May 18, 2011

Praise God! I am simply in awe of the events of the last several days.

Monday's round of pre-op testing was smooth and easy even though Camilla was suspecting something at this point. They did everything, including the finger pricks and drawing blood, without so much as a wimper from her. AMAZING

We checked in at 5:30 on Tuesday and despite the 'hurry up and wait' mentality of the hospital Camilla remained calm and happy. In fact as we said goodbye at the operating room door she was smiling and laughing at our kisses, tears, whispers and bear hugs (btw those were some of the hardest moments of my life but that's another post). She was then wheeled off into the room and she never looked back. An hour later surgery began. We were updated with phone calls every hour and a-half with the option to call back anytime to check. Every call brought good news and a nearer end to surgery. Then came the best surprise of the day, we had just returned from the cafeteria when we looked up to see Dr. Blount walking through the doors with a smile on his face. He shared the news that surgery was complete and had gone well. He was able to do a 'complete cc' with minimal blood loss and no complications- we could see her in about an hour. And that we did - the first vision of her being wheeled down the hall into the PICU was one I will never forget - not at all a moment of sorrow or sadness but of peace - she looked at peace - I felt at peace and as I leaned down and whispered I love you her heart monitor picked up the pace and my heart melted. She was promptly whisked off and we were left to wait for visiting hours.

Upon our first visit to the PICU we found her still sleeping and in the next few hours she was in and out of sleep but mostly out. Visiting hours ended and it would be two more hours before we were allowed to see her again. When we returned for that visit we found that due to an emergency in PICU visitation was closed. We called to check and she was wide awake and looking around - not upset - just awake. This was hard because she really 'woke up' from anesthesia during this time and we were not able to be with her. I still cringe when I think that she might have been wondering 'where's mama?' and not be able to communicate that to anyone in the room.

After just a few calls with questions from PICU through the night, our next visit came this morning at 8:30 when the doors opened again. She had just woken up and seemed happy to see us although she promptly became frustrated, aggitated and upset (I think she thought we would get her and leave). Then came the process of removing 2 of the IV's, the cathater, monitors and headress. After all this and getting into her pj's she felt MUCH better, napped again and then began the slow process of trying to drink and eat again. It wasn't until Fer Fer brought her a box of fruit roll-ups that she really felt like eating and then again when the nurse ordered her tomatoes :) she was one happy chick after that!

Although the transfer orders were written first thing this morning we are just now settling into a room - it's 9:30 PM. She is finally asleep and seems to be resting well. She has been very lethargic today but is more awake and alert than you would expect the day after brain surgery. She has said 'dog' several times and tried to mouth several other words. Her left side is weak and she is not moving it as much as the right but we know that is temporary. She has not been in much pain and is only requiring Tylenol and MOtrin at this time. Her face is swelling and her eyes are begining to be 'black'. Her scalp is still bandaged over the incision so we have not really had a chance to look at it (but no drain). Her head is shaved in a very small patch (I just found the bag where they saved the hair they shaved:) on the top of her head. To describe the approach, put your finger between your eyebrows then go about half way to the back of the head that's where your corpus callosum is and they went in straight down from the top of the head.

Camilla is such a fighter - such a strong little fighter - and that's working to her advantage right now. Dr. Blount said she is on the 'fast track' to getting out of here and Dr. Kim flippantly mentioned Friday. That would be great but we do have a long way to go yet.

The calls, the texts, the visits, the prayers, the people who came to sit with us during the surgery - words don't express my gratitude. Thank you all for sharing this with us - and what a joyful time it was when we recieved the good news. Bro. Allen I will never forget the words of the prayer that followed Dr. Blount's visit - what a wonderful time of praise and giving thanks to the Lord.

And let me tell you about facebook - everyone says fb birthdays are the best but they are wrong - fb prayers are even better. The first time I logged in and saw everyone's profile pics were pics of Camilla and the prayer chain that was circulating and the posts to my wall (btw the notification button doesn't go higher than 100) and the personal messages and the new friend requests and Jeremiah 29:11 everywhere I looked - I just cried every time. You people are great - you sure know how to spread awareness and make people feel loved and supported.

I remain amazed at the power of prayer. There is no other way to describe the peace that surrounded me and Brandon and our families yesterday and the calm that was felt by those who waited with us. We had only one moment of uncontrollable tears and fears at the OR doors but even then there was no question that this was the right thing for Camilla and calm quickly returned and peace restored. Only by the prayers of others is this possible. Thank you does not do justice to the emotions felt for those who prayed and are praying.

Wow - long post. I think the only topic I haven't covered yet is seizures. I'm afraid to type the words - so far 'no seizures'. We remain cautiously optomistic. I'll try to be better at posting for the remainder of our stay and I'll try to cover the topics I've forgotten tomorrow.

"For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you. Plans to give you HOPE and a FUTURE." Jeremiah 29:11

Will update blog tomorrow with all the details of surgery but just to let everyone know - surgery went GREAT!!! She is in ICU tonight and resting well. Thanks for your concern and prayers - God is GREAT - ALL the time!!!!

Thursday, May 12, 2011

this video is of Camilla just playing by herself (a rare moment indeed) - in the video you see Camilla's best friend in the whole wide world - a bear named 'dog' - I was trying to catch her laughing hysterically while it looked like they were having a converstion but of course she stopped as soon as I got the camera - you may notice some things about her development if you're looking a)she says dog several times (this is one of about 20-30 single labeling words she uses - not always correctly afterall 'dog' is actually a bear and she calls Crosby this too) b)she responds to her name being called c)she is HAPPY:)

Tuesday, May 10, 2011

This song just says it all right now - don't worry those of you who are great fans of the 'Dream' song it's still on here just second for now - it will return to first after surgery - I've always loved Bebo Norman and he is just speaking volumes to my heart right now.

One week til surgery. The joy and the pain are overwhelming. Today I am focusing on the joy - the joy of a daughter who God is using in a mighty way. He is building her a strong testimony and I pray that we all use it for His glory. Consciously my mind says I am ready - subconsciously my horrible dreams and mouthful of ulcers say differently. In this particular case I am very thankful that Camilla reamins blissfully unaware of what is to come. Although she is very aware that her Mother is very clingy this week and she squirms to get away from the constant barrage of hugs, kisses, whispers, snuggles,etc...

Thank you all for your gestures of kindness and prayers this week especially. We have been blessed with wonderful family, friends and a loving church family who is reaching out to us during this time and we are very appreciative of them all.

Many have asked how they can keep up with us on the day of and following surgery. I plan to do very general updates on facebook the day of surgery but will probably not have the time or mindset to blog that day. Hopefully I will be able to blog the day after surgery and keep everyone well posted from there. If you would like to friend me on facebook you can find me at Kelley Jacobs Smith - put a note that you follow the blog so I'll know you're not a virus :)

"For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you, plans to give you HOPE and a FUTURE." Jeremiah 29:11

Sunday, May 8, 2011

9 days - I had tried not to do a countdown but Crosby's first birthday was yesterday the 7th and when I thought about it upon waking up yesterday morning my brain immediately said '10 days'.

10 days to get so much done - so much preparation - she has one week of school left - I have 20 projects I needed to finish before she got out for the summer - I have been cooking double and freezing - I have to pack Crosby and decide were he will be during all of this - I have to tend to everything here so that I can be gone indefinetly - and on top of that there are the emotions of all of this to be dealt with - people are no longer believeing 'she's fine' or 'we're good' - I'm afraid the fear is showing in my eyes - crowds make me anxious - EVERYTHING is overwhelming - and I better stop there before the people show up with a nice white coat for me :)

I won't lie - there have been many more bad days than good lately and the reality and doubts are taking their toll but I continue to find comfort in the Lord and know that Camilla is safely resting in his perfect will. 1 Peter 5:6-11 reminds me to "Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you. Be alert and of sober mind. Your enemy the devil prowls around like a roaring lion looking for someone to devour. Resist him, standing firm in the faith, because you know that the family of believers throughout the world is undergoing the same kind of sufferings. And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast. To him be the power for ever and ever. Amen."

Seizures are better this week than last. We are continuing to learn more about the surgery each day. Please pray for all of us - this is so much more difficult than I ever thought it would be - and I never thought it would be easy - please pray for our 'hope' and 'future' (Jeremiah 29:11)

Tuesday, May 3, 2011

So surgery is scheduled - May 17th is the day. We will arrive at Children's on the 16th for pre-op testing and we have to check her in for surgery VERY early on the morning of the 17th. She will be in PICU at least the first night and if everything goes perfectly our stay should be about a week. The surgery itself will last about 3 hours but once they take her back it will be roughly 7-8 hours before Brandon and I will be able to see her. We decided to go with a complete corpus callosotomy. Dr. Blount (neurosurgeon) strongly suggested this (as did Dr. Kim her neurologist) and after many questions and much discussion Brandon and I felt MOST comfortable with this decision. Dr. Blount went into great detail and explained that it would not be impossible to learn to read (which is one of the things we were originally told and were concerned with) but it could effect reading. The greater worry (and why it would effect reading) is that it WILL limit her peripheral vision. As horrible as this sounds (and feels) he was very adamant in reminding us that our number one goal must be to reduce/eliminate seizures or development progress can be a non-issue. After the appointment we felt very relieved for several reasons 1)many questions had been answered 2)Dr. Blount went into great detail describing everything we could expect from start to finish (2 hours worth) 3)tough decisions were at least made and behind us 4)we had a date for surgery. So now we have entered another phase of waiting.............but I'm thinking now that this will not be the hardest part.

As for her current coniditon - I think the seizures know that we're coming after them because they're fighting back in a big way. Last week averaged 35-40 per day and they were coming in some pretty scary clusters that lasted awhile. After the clusters she would grab her head and just say no,no,no... this while running around in a very frantic state. It breaks my heart to think they are hurting her...I feel so helpless. After tossing around many options as to why this may be happening now I firmly believe that it is God reinforcing the decisions we have made concerning surgery (thanks Amanda) because let me tell you the doubts have been creeping in. Still increasing Lamictal.

This past weekend was wonderful. It was the best weekend I've had in awhile. Thanks to Jennifer and Ryan's wedding in Destin, FL I was able to get away for a long weekend all to myself. I spent way too much time sleeping on the white sugar-sand beaches, in the spa and just sleeping in general but I was also able to catch up with friends new and old and just generally relax. ALL Moms should do this for themselves once in awhile and I will surely be doing it more often! Thanks to the grandparents for watching out for the kids (Brandon too had scheduled a long weekend to himself turkey hunting in Kentucky - I guess Dads need to relax too). So anyway, since the appointment last week and then the tornados that have affected sooooo many sooooo close I had put off all thinking and feeling until after my vaca. Well, now that I'm home and the reality of it all is hitting like a semi I am feeling quite overwhelmed by most everything. There is so much to get done and prepare for before the surgery and I simply can't find the energy or desire to do any of it. Please pray for this-

Again, I want to thank everyone who has reached out to us following the appointment last week. We were barely out of the hospital before we were receiving texts and calls wanting to know how the appointment went and when the surgery would take place. It is so comforting to know those that love and support you in times like these-thank you all.

It is late - I am tired - I hope this post has made some sort of sense - one verse that still does - "For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future" Jeremiah 29:11

Camilla's Story

Camilla is such a blessing! In April of 2006, at just 6 months old, she was diagnosed with Infantile Spasms, a very rare and devastating form of childhood epilepsy. Despite numerous medications, the Ketogenic Diet, a Vagus Nerve Stimulator and a Corpus Callosotomy she continued to have daily seizures until undergoing a grid/resection surgery in March of 2012. She is still challenged by severe developmental delay and she doesn't speak but this sweet, energetic and happy little girl amazes us everyday with her grace, her beautiful smile and her contagious laugh.